NIHR Blog

Public involvement in research - what difference does it make?

As Impact Lead at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) I spend much of my time designing and delivering impact assessments. I work closely with colleagues across the NIHR and with INVOLVE. The key question we keep coming back to is ‘What difference does PPI make?’ and ‘how can we build the evidence base?’ Using Researchfish, the NIHR, along with other funders of research, have developed a set of questions that we think will provide us with a rich insight into these issues.

When I started working at the NIHR in 2008, questions asking researchers about how they had involved patients and the public in the design and delivery of research had just been introduced into our application form. For some researchers, this was a natural part of the research process. For others, this was a new challenge. Nearly ten years later, involving people in the research process has become the norm. No researcher or institution that applies for NIHR funding can expect to be successful without an effective plan for public involvement.

In 2016, the NIHR introduced questions in Researchfish that focused on how people have been involved in research and the benefits this brought. In 2017, we refined our approach and added a further question about the challenges of involving people. Researcher responses to these questions are rich and informative, but myself and colleagues at INVOLVE still felt that we were not quite getting to the nub of the issue. Working with other funders offers the potential to get closer to the insight we crave.

Over the summer of 2017, representatives from Marie Curie, the Dutch Arthritis Foundation, INVOLVE, Arthritis Research UK, Cancer Research UK, Parkinson’s UK and Researchfish have developed questions that capture if and how people have been involved, the benefits and challenges of involving people, and reflections on difference it has made to our funded research. Researchfish have built the questions and they have been used for the first time in November 2017 by Arthritis Research UK, the Dutch Arthritis Foundation and Marie Curie. The NIHR and Cancer Research UK will follow in the spring 2018.

To my knowledge, this is the first time that funders have collaborated to develop a common additional question in Researchfish. It has been a real pleasure to work together, to hear the perspectives of others and to build consensus. I look forward to reviewing the questions after the next submission periods and interpreting our findings. Most importantly, I look forward to sharing our insight with the wider community. If you want to know more, or would like to get involved, then get in touch.